Where is it written that caregivers are supposed to have endless patience, energy, finances, etc. to help their LO with dementia?

I think some of the issue is all of the life-prolonging drugs and efforts, even while people lose all independence to dementia or mobility issues. That's a weird system, to me. I don't have a good alternative but my maternal grandmother and my father have both refused life-prolonging treatments at this stage of their lives (91yo and 82yo). I wouldn't wish a shortened life on anyone but keeping everyone alive as long as possible even while they have little or no quality of life, and no ability to do ADLs, seems an absurd thing.

I think in another 100 years we may get more progressive about this issue, and allow people to choose not just no more life-prolonging treatments if they are deemed to have progressive memory loss, but death with dignity options.

I probably sound a bit heartless but I'm far from it, it's just that this current way of dealing with old age seems unsustainable to me.

People need to plan for these things, too, so their end of life isn't life ending for others. My father, for example, still refuses to put POA in place, which is ridiculous on his part.

I feel your pain. I have been caregiving my 94 yr old mother since she moved here by us 8 1/2 yrs ago. She is blind and couldn’t live without assistance when my dad went into a NH. So I was the only “child of hers” left to be responsible for her. Her health has declined during these years, but not enough to move her to the hospice facility we have. She is on hospice for chf, but she has so many more health risks. So it’s all still on my shoulders. I just spent my Saturday doing her grocery shopping and hating every minute of it. Then I deliver and put her groceries away. Then I do her weekly medication, water her plants and make her lunch. Then I left because I was so weary. I am so over this. I should be more loving, but I am resentful. I am merely her indentured servant and her remaining independence rests solely on me and my health. She has soooo many co-morbidities, that if I listed them you would wonder why she is still alive. But she still manages and therefore still in her own home. My relief will come when she qualifies for our hospice facility. I will be so happy when she is in someone else’s hands and being taken care of well. It does seem never-ending while going through something like this. I often wonder if she will outlive me as I have a cancer diagnosis, but I’m in remission. Thank God!

Just know there are others who feel your pain and can relate well. We don’t even know what our lives would be like without all this caretaking. Please seek the help of professionals to help you out with care before you fall apart.

I can understand fully. I met and married my dear husband 11 years ago. We were so much in love, were very compatible, went fishing, camping, & hunting up until 3-4 years ago. I am 84, my husband is 82 & has Alzheimers/dementia. He still loves me very much but wants me by his side 24/7. I only have time to myself if I get up before he does or if he takes a nap. He doesn't like me to take much time on the computer & has threatened to smash it!!. I have type 2 diabetes/neuropathy and HBP which is under control with diet and meds. His Dr. put him on an antipsychotic and it has been a great blessing for his anger spurts. I get so tired of the same stories/questions over and over. I am thankful I don't have to deal with incontinence, he is very good about his toileting. We do not have much money and have been denied Medicaid (I won't go into detail why) so I can't get help. He has 2 daughters who are too busy to spend a whole day with their dad so I can leave and spend time with my daughter. Any way the only way I can do this day by day is to trust in Jesus, read & listen to His Word and watch great preachers/teachers on the TV. The problem is now he doesn't want the TV on. Dear Lord help us!! This is so hard, it too will pass;. How long, only God knows & I pray for His strength and wisdom.

I understand exactly how you feel. I have been in the senior care industry for 16 years. I also have a brother that is one year older than me with a traumatic brain injury. It always seems like all the work falls on a single family member, while the rest of the world sits in judgemental roles. You have to take care of yourself first, before you can be of any service to others. I have tips and tricks for different situations. I would encourage you to hand all duties over to someone else for a week and take a moment to just be you. Be carefree, do things uninterrupted, and do things you enjoy doing. You will be surprised how much it does for you.

It’s not too late to make a change. Get help or let your mother reside in a facility where she will be cared for with compassion. Visit her often but for short periods and make her last days pleasant for both of you.

"Our government and the medicaid program expect way too much"? ?The government should not truly or rightly be involved in health care at all.Our country was founded by stron independent people wh always called only on God for help.We have slowly allowed government to become more and more large and controlling.We should all try even in thes confusin difficult times to pay for all our own expenses, to buy our own insurance including health insurance and LTCI.We have allowed things to go so far now that it isalmost impossible to manage really responsibly, but we must try.Those who are still young enough should plan carefully now while still healthy and employed to buy good health insurance, life insurance, and LTCI.We should all try our best to pay off mortgages and to remain frugal and debt free.i have never ever been able to buy vacation trips, expensive clothes, nor a lot of other things. However, the peace of mind and tranquilityof being debt free and having a mortgage free home and LTCI are all much more enjoyable than any luxuries could ever be.People in my generation had great grandparents who immigrated to America in the early 1900's to escape caste systems in other countries. We had parents who had no electricity, indoor plumbing, autos, nor phones. We know how to appreciate the blessings we have and how to be happy with simple basics.I do sincerely hope and pray that I have with God,s help made provision for my care if i should ever become helpless and dependent.I do know none of us has the right to depend on our children nor the government.I do have a wonderful TRS pension and I do hav Medicare A and B. However, I do realize it was much better when private businesses and or local and state governments provided pensions and health insurance instead of the federal government doing it.We are too totally mired in red tape, etc. to go back now. However, we should try our best to provide for ourselvesand to not become a burden to others.

Have you tried adult day care? Being a caregiver is extremely trying and under appreciated. You need a regular break. Many adult daycares can take patients anywhere from one to six days a week. They provide transportation as well. They can run from $40 to $100/day. Getting regular breaks can really help you.

I think Nowhere. Caregiving has become elongating one's life so they the Medical System can suck every last dime out of the disabled/ elderly person, before they pass away. I don't think my Mom, paralyzed by a stroke 4 years ago, wanted to live they way she is living now. But a Doctor said to me at the LTAC/ Rehab Center, she is so young (63), at the time, you should really think about putting a feeding tube in her. My Mom was a very active person/Grandma before this stroke happened. Her Memory is good, but when it comes to doing things, she doesn't seem to want to do most things anymore. She was refusing to eat at the time, probably because she was just done. The Doctor however ensured me that she was still young enough to get better. So me at (42), with all the hope in the world that she could/ want to get better and with her, my siblings, and her husband decided and signed her health release to get the feeding tube. She wasn't eating the ground food they made her much, but she would eat soft foods that I and my siblings would bring her. I brought her home, after, and her husband, my Dad/ Stepdad, who was an alcoholic and heavy smoker, not able to take care of her himself really, and ended up diagnosed with cancer himself, and passed away at home with us, where he wanted to be, not at a hospital, 2 years ago. We took care of him also, but he was able to make decisions for himself at the time, and when we got his diagnosis, decided/ accepted hospice and passed away after 3 months of his Diagnosis. Anyways, back to my Mom, she is easy to take care of, but when we first brought her home, we worked with Home Health, who didn't really do anything other than stop by for 10 - 30 minutes, attempt to get her up and walking (PT/OT), Check her Vital Signs (Nurses); she didn't really try or seem to want to walk again. We tried the PT/OT, she just wasn't helping us, or just couldn't because of the brain damage caused by the Stroke. We were just dragging her across the room, basically when we would try. She didn't want to be in the Rehab Hosp, fell out of bed, trying to follow us home after we left one night, because she just didn't want to be at that Hospital. Her neighbor had visitors all hours of the night sometimes. This Pandemic has really shown how truly BROKEN our Health System is. We have half a country who wants a Medicare for All-type plan, and half a country whose premiums rose so much with the ACA, that they want it repealed because they feel they are paying and subsidizing other's healthcare and can't use it for themselves. If you have ever read the book The Giver, they have places where the elderly go and are cared for until they die. This current model of sucking every last penny out of our loved ones before they are allowed to die and at the same time halting the lives of their caregiver/ loved ones is a pressure cooker waiting to explode. Luckily my Mom is pretty easy to take care of, but it was very hard at first, when we had both my Dad, and My Mother. She does get her moods, loves me one minute, hates me the next. Doesn't want to bathe, and fights me on baths. Insurance doesn't want to pay anything and fights as long and hard to do as little as possible for people, but yet Healthcare professional/Doctors want to send her for more treatments, that are unnecessary. Sometimes we just have to put our foot down with Doctors and know when to say enough is enough. We need to FIX our Healthcare System. Sorry for the long rant, but that is what I have dealt with the last 4 years, and I love my Mom more than anything, she is practically like my best friend, except maybe my husband and Boys, but I cannot imagine putting my sons or my husband through this, although I know they would probably still do it.

I agree with you- I almost had a nervous breakdown caring for my mom, while I still work full time, have my own family and no help from my siblings...I finally had to put her in a residential care facility. The home is very close to my home. She’s happy and getting the care she needs and I feel a whole lot better...

I feel your pain. I have been coming here for support and info of anything that may help. Me and my siblings were at a point where we were almost losing 'our' minds so I decided that since all these medications cannot cure her I decided to wean her off most and see if that will change anything and oh my did it! I spent a lot of time and energy on personally review and researching each medication that were being prescribed for over a year and decided that they were causing more harm, more issues, more agitation, etc than good. Of course mom still has dementia but we have seen a marked change for the better in behaviors!! She is calmer and sleeps better. Hope this helps in some way.

Caring for my 92 year old Dad and helping my 87 year old Mom take care of him for three years I found it was very rewarding to me. We were fortunate as he was a very sweet sweet man. Did I give up a large portion of my personal life yes I did. Did I give up my career and retire early yes I did. Were there days and especially endless long nights where it was trying and frustrating with no sleep for me absolutely. Yet I knew I wanted to take care of him. I knew it would not be forever. And it wasn’t forever. I have absolutely no regrets taking care of this man I called Dad. The man that was there for me through my 60+ years of life. I would do it again in a heartbeat. We we’re determined Dad was staying at home and we were determined to make the last few years of his life quality. It was all about Dad. And to me it was about not only Dad but my Mom as well. Dad had a pleasant (as much as could be) last few years of his life. I help make that happen for him as well as relieving a lot of the pressure for my 87 year old Mom. Everyone is different with facing the dementia diagnosis of a loved one as a caregiver. It will not last forever. Please try to keep that in mind.

Just remember that you're plan to 'never put anyone through this' better be written down somewhere now. Should that disease creep up on you, you won't know it's happening and may disrupt a child/relative's life just like you describe of your mom. The brain is broke and the patient can't help it.

If you can even imagine that someone would care for a loved one as part of a martyr complex - I would direct the question back to you. Did you take her in to be the family martyr or did it begin as doing it out of love for the parent? Anyone here would tell you it is a miserable life for those on the caregiver side because the person they knew is slowly disappearing before their eyes. And there is no end in sight, just an end when it comes.

If hers is that advanced and you are that miserable, it may be time to move her to facility care. It's a personal and case-by-case decision the family has to make

You may still seeing your LO as they were before Alzheimer’s and dementia. This makes it more difficult for you to see them as more helpless, and less understanding of their behavior. I found it a lot more easier to adjust to the illness by viewing a patient as a child; albeit a bad child many times. It’s good to vent your anger it will help you address it. Is there a social worker or doctor that you can talk to? May God bless you for helping your LO. Sometimes we cannot see the hand of God until you step back and look at the forest; instead of the trees.

i hear you loud and clear and you are l,000% right. Dealing with dementia patients can and often will destroy the caretaker. They cannot be fixed, they will get worse. While there are some people who do have the patience and understanding, I feel if you are normal, you will start having a terrible time tolerating the constant problems. I know I would last all of two minutes. I have had the most horrible problems with a few friends who developed dementia and one had to be locked up and the police involved. They terrify me, I won't and can't stand to be anywhere near them even though they are broken and iI feel sorry for them. I have said it over and over again - when they start doing things that mentally and physically destroy YOU and impacting your life in terrible ways, they MUST BE PLACED IN A SAFE FACILITY - no matter who or what the relationship is. There are ways to do this even if someone has little or no funds but you need advice from an eldercare attorney - most give free consultations. Do NOT put up with this. You are worth much more. End this now and have peace.

So relieved to see your post! Caring for my husband is driving me around the bend. I’m losing my empathy, patience, happy disposition, and any hope for my future. He’s happy, continent, and very rarely argues with me so I don’t have it anywhere near as bad as most caregivers. But my very intelligent husband has ever so slowly turned into the village idiot. His memory is now so bad it’ll take 20 min to patiently explain something to him only to have him ask about it again within the next 5 min as if the entire previous frustrating conversation never happened. And we might do it a 3rd or 4th time. And don’t get me started on the false memories!!!! Some of those just launch me to the moon. Just like you, I’m sick to death of everyone’s advice on how I can do things differently so HE doesn’t get anxious. It’s always about HIM! So far, I haven’t lashed out at any of the well-meaning people who feel the need to explain to me what he must be feeling. I’m sick to death of getting deep empathy for poor Bob when I share my frustration with him. I fear I’m very close to losing it and screaming at some well-intentioned soul that I am well aware of his feelings but can’t understand why no one seems to give a rat’s a$$ about mine.

I am so sorry . Your life has been stolen . That's what it is and that's what it feels like . It's a curious existence.
It's fine to be angry, it's fine to feel trapped and hopeless . This happens to most if not all caregivers.
Since my grandmother was diagnosed I have not had a moment's peace or a day where I can be by myself and indulge in whatever I want to do or not do .
Do I resent it ? Sometimes . Do I feel sad , yes . But I know mama cannot help what has happened to her and it is left for me to do the heavy lifting . It's exhausting answering the same questions day in day out time and again . Getting her to bathe . Getting her to change her clothing . Convincing her there are no men in her room at 3 am . Look, I know .
I see it like this , she is a finite being who will not be with us forever. I have to be of service to show my love because she did not ask for this and she looked after me as a child before I even knew what a privilege that is to have .
Dig deep . Deeper . Think of what would happen to your loved one if you gave up . Think of how , if they have moments of clarity how scary and horrible this situation must feel for them .
I hear you and I feel you because I know just what you mean . There isn't a solution for it but within yourself .
As for other solutions , post her specific behaviours that are driving you mad . You have a wealth of experience here with people who may have gone through exactly what you are going through and who can give you insight into how to deal and cope .
Is she refusing to bathe. Someone here has dealt with that . Not eating or picky eating? Someone knows what to do . Talking incessantly ? Again , someone can help. Ask , use specifics here . Try everything .
Dementia patients are sometimes puzzles that need to be carefully unlocked and this site is nothing but a bunch of keys .
As a fellow wary caregiver I understand how you feel and I wish you the best of luck and patience .

I care for my mum & dad who both have end stage and mid stage dementia.
I hate doing it, it’s not rewarding and I only do it out of duty and because I don’t want to split them up or watch them be neglected in some social services care home ( I am in England, uk) .
it’s unbelievably draining and has impacted the lives of my family in every negative way possible.....but we go on for as long as we can.
so please take some comfort in knowing that other carers are human too . We are not superwoman/man and don’t be afraid to acknowledge that carering is not all smiles and jigsaws, that actually being a carer is pretty sh*t. Good luck to you . Well done for having the courage to have an honest rant.

I feel exactly the same way. The dementia and ugliness is worse than her incurable cancer. I’m living her life, not my own.

Age alone does not ever cause dementia. Drugs whether legal or illegal cause dementia. Head injuries cause dementia. Malnutrition causes dementia. Age alone is not the cause of this tragedy.In many older people, severe malnutrition is caused by statins, diuretics,narcotics, and other so called meds.The resulting deficiencies of B12, magnesium, potassium, and other essential nutrients do cause dementia.i am 86, healthy, strong. med free, and pain free.My precious daughter is only 65, but she has terrible physical problems and also dementia.She is in an excellent assisted living facility. She is carefully supervised day and night and a nurse supervises her many "meds".I refuse to allow her or any addicted and or demented person to live with me.Nobody should ever feel obligated to be a caregiver of a demented and or addicted person.If caregiving is chosen and if the recipient is neither addictive nor abusive in any way, then perhaps caregiving could be a loving and productive lifesstyle. I have seen some such very wonderful situatios. i believe they are rare. I believe caregiving should be a choic; not an obligation. i have LTCI. I have chosen 3 excellent facilities in good locations. my son and my dr. are instructed to help me enroll in one of them if i become incapcitated. I am hoping to live in my own lovel cozy home until i die; just hiring help when needed.However, I have tried also to prepare for the worst as best as I can.In the 20's and 30's no old people i kew of ever became demented untill just a monyth or less before death at 95 or older. I believe the proliferating old age dementia today is strange and horrible. I cannot understand it.Is it mostly caused by drugs?

I understand your frustrations. My husband and I took care of my mom who had Alzheimer's, for 5 years until she passed away. I tried to find the humor is the situation such as when she wanted to tell someone that she pounded the pavement, looking for a job in NY after college, but what she said was, "I walked the streets of NY, if you know what I mean." My mom might have been a sweet talker, but she wasn't a street walker.
It wasn't all fun and games, of course, but I found that finding humor in the situation helped. I even wrote a book about our travails called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." Hang in there.

First, let me say Exhausted One, that I am so, so sorry for all that you are going through. We went through this also. We moved my MIL in with us a little over 2 years ago. She was diagnosed with Frontal Temporal Dementia. We knew that it would either move her to the end quickly, or take it’s sweet old time with her. My husband had the full brunt of her care because within months her short term memory was gone, as well as her memories and knowledge of me. She was hateful towards me because she couldn’t remember who I was. I lived like a shadow in my own house trying to stay away from her because she would physically and verbally attack me.

My sweet husband would lose his patience with her and scream and shout at her and then feel so horrible afterwards. I told him, and I’ll tell you, that when it becomes too much to handle and you scream that you’re only human! No person is made to stand this kind of responsibility or draining energy alone.

If I had a dollar for every time that someone who has no idea what this is like told me “but it’s not personal, it’s just his/her disease” I would be richer than Bill Gates. They don’t know and won’t know until/unless they go through this.

I feel that our government and the Medicaid program expect way too much from families for our loved one’s care. We finally had to put her in a care facility and unfortunately they were not equipped to handle FTD, which is vastly different from dementia and Alzheimer’s disease. We spent so much money trying to help her. She didn’t qualify for Medicaid because of property that we had sold before moving her in with us. We had to wait a mandatory 5 years to apply for Medicaid or pay a huge penalty for several years. This country is not equipped to help our aging population, and sadly it seems that no one wants to consider helping the person and their families.

I feel for you and wish that I could wrap my arms around you and hug you until you felt normal again. Please know that you are NOT ALONE in this! And that what you are feeling is perfectly normal! The worker’s in a care home get to go home every day. We don’t. We have no escape and the only people who understand and can empathize are those who have been there or are going through it. My MIL is finally at peace, God rest her soul, but I am still left with mental, emotional and psychic damage to deal with.

Please take care of yourself and know that we all support you! Love and peace to you.

As I watch the politicians argue about health care, I wonder why nobody is bringing up the expense of nursing homes for our elderly. Many cannot afford to send their loved ones to a facility due to finances. With the upcoming baby boomers aging, this country will be in sore need of affordable facilities for my generation.
Just as we retire and plan to enjoy our free time, along comes the responsibility of caring for aging parents. It exhausts us physically and emotionally and curtails our social life with friends and grandchildren. Yet, we somehow feel responsible for taking on that burden, not realizing the terrible effect it will have on our lives.
I would like to see a forum here that gives us more concrete info about facilities, organizations, financial advice, etc. as to how one goes about making the transition for removing your loved one from your home to an affordable facility. Who has done that successfully and what were the steps you followed? To me, this is one of the major (hidden under the cover) health problems that exists in our country/world today - and it’s about time it was brought up as a national pandemic that threatens the future of our country.

You are exhausted and in need of some time to yourself. Take notice. Try to put something in place to give yourself some respite, otherwise you will get overwelmed and things will get worse. You deserve some care and attention and you have a duty to give that a priority - don't take no for an answer - give yourself a soothing talking to and find the space to plan a better way forward. Good luck!

Amen!! My mom doesn’t live with me but I’m to the point that I need a break. In fact I am taking a break. My brother is doing the dr. Appointment on Monday and she is having a fit. When i was there on Thursday, I wasn’t talking normal (whatever that means). I was chores. Before that I didn’t get there at 1 when I told her I’d get there at 2. She’s so nasty and mean. She calls most of us bitches - the people who actually do things for her (aide, PT, OT, dining room staff) if we don’t do things when she thinks they should be done.

I, too feel a little uneasy when people say you’re blessed to still have your mother (she’s 94). She’s miserable and wants to die. Some days I want her to die, but then think of how much therapy I’ll need afterward for my ill-toward feelings. It’s definitely playing with my health. Took my blood pressure after Thursday’s visit and it was off the charts. That’s when I called my brother. I know not everyone has that option, so for that I am blessed.

Although I don’t know your personal situation, I hope you can find a way to give yourself the space you need to refuel.

Thank you for speaking the truth. I fortunately did place my mother in an AL and I’m still angry and exhausted. You are not alone feeling the way you do and don’t let any of the “it’s such a blessing to care for your parent” baloney make you feel any kind of guilt. I pray all the time for a quick end and I too do not plan to put my kids through this.

There are many people (including me) who feel the same as you do.

Please consider joining the Alzheimer's/Dementia Caregiver's Support Group on Facebook. It is a group that gives support and allows you to vent with NO judgement.
https://www.facebook.com/groups/330382867315056/permalink/1241877979498869/

I'm crying as I write this. I cry a lot lately because it's time to place my wife in a long-term care facility. I cry out of frustration and anger because no matter how prepared we think we are to help our Loved One with their battle, just like during a real battle, when the first bullet is fired, everything changes. You have every right to feel at the end of your rope. I have found a lot of caregiver support groups, even in the small town of Grass Valley, CA.
Find one.
Listen to their stories.
You will realize you are not alone in your feelings.

I want to thank you for venting today. My mother with dementia lived with us for 4 years. She died this week and I have been feeling so many emotions. Lots of relief for both of us and so so much sadness. I’ve been questioning myself about the resentment I had much of the time for her care having taken over my entire life. People would say “it’s a wonderful thing you’re doing for your mom” and I would think “yah well you don’t know how resentful and pissed I feel much of the time so don’t give me too much credit”. When she died I suddenly forgot how difficult and trying it was. Blaming myself for lack of patience and even anger at times with her. Getting flashbacks of times she would be nasty and seemingly purposefully difficult and my reactions would not be the best.

When I read your post it reminded me I was just human. Intellectually I know I did my best and that was really pretty damn good most of the time. It is a situation more difficult than anyone can ever understand without having experienced it, no matter how much you love your parent.
I hope you can get a caregiver for some time so that you can get out some, that is the only thing that kept me going at times.

Dementia is a terrible disease, and it can go on for years, usually with declining capabilities. You are also entitled to a life. You have a few options. You can get help by having someone come in to take care of her while you have a break. Or she can be moved to an assisted living/memory care facility. Consult with a social worker or organization that specializes in elder care to find out the options in your area. There are some senior facilites where you can both move into the facility and you can be in independent living while she is in memory care. Make sure that your paperwork is in order so that others know your wishes for yourself.

It is not written anywhere.

You and only you, know what you can and can not do.